Young Adult Metastatic Vaginal Cancer and life after

Tag: Vaginal cancer

I really wanted my next post to be a vlog and I’ve been wracking my brains for days on end about what my next topic should be.

Obviously this is not a vlog. On this topic, I needed to be clear and concise and I can’t do that without thinking about what I’m gonna say and how it needs to be worded.

So I’ve brushed over this topic before but I’ve never really gone into the nitty gritty.

Infertility.

I’m infertile. My eggs are naff. They’re non-existent. There will be no babies.

This isn’t because of my cancer. Vaginal cancer hasn’t made me infertile and it’s not fucked me up down there. I function normally… In case you’re wondering 😉

Radiotherapy made me infertile. As my radiotherapy was directed in the pelvic region it didn’t just target my tumour. Radio beams hit my womb, ovaries, intestines, colon, stomach, liver, kidneys, the lot. For those of you that have never experienced radiotherapy let me just explain the effects as best I can… It burns you. After treatment you generally have a red mark where its been targeting. Or sometimes your skin peels like you’ve been sunburned. It can blister, swell, redden, peel or all of the above.

With me, by the end of my treatment from the tops of my thighs to my lower ribs front and back my skin changed colour. I went from a fair skin, that tans slightly in the sun but burns easily, to a skin that looked like it’s spent 20 days in the Sahara slicked up with oil. Without sounding racist my skin colour was a different ethnicity.

So with that on the outside, its no wonder it damaged my ovaries. So this probably brings you to the question what we’re my fertility options? There were none.

From the day I was diagnosed, to the day of treatment beginning, there was 3 days. I had a very aggressive tumour. It grew rapidly and with the size of it already (10 cm), they couldn’t risk any more time, in case it spread. It did, but they didn’t know that at the time and they hoped it wouldn’t. The option of harvesting any of my eggs for future IVF treatment was never on the table. It would have meant that I would have to be on a selection of hormone drugs to up my ante for egg collection. Not only that, but to retrieve said eggs it would also mean an operation and the tumour was in the way of the route they would take to collect my eggs.

At the time of being told this I didn’t care of the situation. When you’re that sick all you want is to get better. I never processed this part of treatment. I never dealt with it. I just thought logically and got on with what needed to be done.

After radiotherapy, brachytherapy (an internal form of radiotherapy – they target the tumour directly with radio beams) and chemotherapy I was then under the care of the early menopause clinic.

You can only be officially declared menopause free when you’ve had no period for over 12 months. However I still needed to see them to see what function I had left. A simple blood test works for this to see what your FSH (follicle stimulating hormone) level is. This is the hormone that helps release the egg. My FSH was 84. I remember saying to my doctor “that’s good then?”… Umm… No. On average, it should be between 4 and 20. At 84 it means my body is trying to kick the ovaries into action. So with this, they knew that’s it. It’s HRT (hormone replacement therapy), artificial hormones to replace what my body can no longer produce.

If I didn’t take this? My body would be too screwed when I get old. Osteoporosis, brittle bones, muscle deterioration, heart disease, strokes, the list goes on. I’ve got enough to deal with already don’t I?! So I take it.

Hey, fun fact: did you know that although I’m on HRT I can still have a period if I wanted to! Not a real period, but apparently, some women who go through the menopause early feel they’ve lost a bit of their womanhood. Or naturally your body still bleeds monthly. HRT is expansive like the contraceptive pill. Actually, some use the contraceptive pill as their hormone replacement. Look-wise there’s no difference in the appearance of the pills and the packet they come in. For me, I didn’t see the use of having a period if it wasn’t doing anything. That’s one nuisance I’m glad to be rid of!

During this consultation with my early menopause doctor she asked if I had a sister. Yes, I do, I said. She smiled and said good. She explained that in the future she could be an egg donor for me. I shot that down immediately. I love my sister, don’t get me wrong but that is just crossing too many lines for me personally. Until recently I realised she asked this because the NHS will not fund egg donation. I would have to find my own donor or fund it myself… This is about £5000+

I’ve always had strong opinions on where I stand with such tricky areas like IVF. I just wouldn’t do it personally. I couldn’t put myself through that emotional trauma. I have nothing against IVF or IVF babies I just don’t want it for myself. So it’s never really been an option for me. I never sat down and considered it.

I’m very much a practical thinker in life. And being this way I think has helped me considerably when I’ve had to deal with such emotional situations like this. Don’t get me wrong, I am deep down to my core devastated that I can’t have my very own baby. And it hurts so bad some days when social media is covered with friends babies or pregnancies but that’s OK. I have my cry and I move on. I deal with it.

Fertility is such a hairy topic for those who go through problems, have IVF or just plainly can’t have babies.

You can’t talk to someone who’s had babies. They don’t get it. They have theirs. And you can’t talk to those who don’t have babies but still can, because they can’t relate either. My friends and family know my situation and they let me talk when I need or want to. They help. But things move on, the feeling of sadness goes at the end of the day, it’s not a topic that they will always be thinking of.

Friends please don’t stop the social media posts if you are reading this! I’m not hating on you. It’s just some days are harder than others and it’s issues I have to deal with not you.

So you may think, but hang on what about fostering or adoption? That’s a good route. And yes, I would agree. It was my option this time last year. But since then my cancer has gone metastatic when it gets to the stage 4 region (did you know I had to Google that bit? I’ve never officially been told its stage 4) you’ll never be cured from it. You have to constantly deal with the thought of it still lingering. It will come back.

I can’t put a kid through such an unstable future. You may not agree with my reasoning but this is the way my life is.

So this is the way it is. My kidless future.

It’s a very different perspective when that option is stolen from you and not a choice you’ve made yourself.

If you have any questions or I’ve not been clear on anything please feel free to message. I’m very open on my infertility and treatment.

Also, if you find you are like me, and have gone through the menopause early, then there is a great charity that can help with people who can relate. The Daisy Network

What happens when the rational level headed girl I used to be starts to lose her mind?

Its been a long week this week. I expect you all have been looking forward to this short working week so you can relax for the Easter holidays.

My mind has been burning over time. I’m pretty emotional this week. Not over anything in particular just the usual, the next step.

I’m starting to make plans again. I’m off to Switzerland in a few weeks, that was the first plan I made.

A mother fucking holiday.

I’ve been thinking a lot too about what happens after my next scan.

If all goes well it will be work.

I can’t seem to write what I’m feeling at the moment I feel like it’s all over the place.

Work is such a simple step to get back to. Then why does it scare the living shit out of me?

Its not the thought of going back to work. Apart from this whole shit storm that’s been my story for the last 15 months I’ve always worked.

Its the whole what do I do? I feel so fucking lost. As hard as I try to stay the same person that I used to be I’m just not. It’s impossible to be that person anymore.

I had a cough this week. Well… I convinced myself I had a cough. And I convinced myself that this cough was coming from my left side. The left side that they’ve not treated. The left lung that they decided the tumours were too small to treat with radiotherapy.

How do you keep a rational and level head? I’ve forgotten.

I will forever be this person that is a hypochondriac that thinks they are dying of cancer before anything else.

I was asked a few weeks ago if I’ve ever considered not making cancer my life.

Kind insensitive right? It’s shitty comments like that that stick with me. It’s hard for it not to. Is that how people see me now? This boring cancer story. It wasn’t meant in a malicious way or for me to take so sensitively… But how can I not? This is my life now.

My friend was explaining to me her feeling of anxiousness. I’ve never really understood anxiety having never experienced it myself. I understand the workings of it. And I’ve always respected those who have to deal with it but I’ve never really experienced it for real.

I wouldn’t say I have anxiety. (Reading this you would probably say that I do) But I don’t.
I just actually understand it now. You know that lump in your throat that you get when you feel a little emotional but you don’t want to show it? And you try to swallow to get rid of it but that doesn’t work? I’ve got that but instead of my throat it’s in my chest like right under my sternum. And it’s not a little lump it’s the size of a tennis ball I would say. It’s not always there. It just crops up when I’m making plans.

What if I have to cancel them?
What if I get sick?
What if I make people upset again?
What do I do?
How do I live my life?
Do I have a headache coz I’ve not drunk enough water today or is it something else?

It goes on and on and on.

These questions just never shut up.

Its continuously going round and round in my head. All I want is for it to SHUT. THE. FUCK. UP.

Cancer…

Cancer…

Cancer…

It doesn’t get better the more you say it does it. Damn.

I’m in this bloody lingering place of limbo again 🙄 I feel so useless. I feel forgotten.

All I’m doing is waiting until they can scan me again in a couple of months. When you’re going through treatment you feel so awful physically but you feel good (or at least I did) mentally because you know something is being done.

I’m waiting on fate to give me some luck now. It’s out of my hands. Fate has not given me much luck previously. Fate is a bitch.

My story isn’t so juicy when you’re waiting so you tend to lose a lot of interest from followers. I’m not at the start of diagnosis where it’s a shock to everyone and I’m not dying right now so there’s just no juicy gossip to pass on. I’m stagnant with my diagnosis at the minute.

I’ve taken to reading a lot of cancer stories in the newspapers lately. It’s probably because they catch you with the title “woman, 22, survives cancer against all odds” or “man survives cancer by eating lemons”. They like to draw you in with the catchy and unbelievable titles 😂 …and man alive… Am I gullible. But to be fair once the cancer train has hit you its hard to pass over these stories.

You have to go careful when reading these stories in the media. I feel like everyday I am coming across some natural remedy that will beat cancer. Some story of some person who was on deaths door and took this magical natural remedy for a period of time and boom! They’re cleared! It’s so hard not to get wrapped up in it all and believe this magical cure can work because sometimes they give you false hope. I’m not feeling hopeless at the minute but I’m feeling realistic. I believe some of these stories are true but I’m also aware on how rare they are. I’m not opposed to trying some new found hippie dippie cure if it works I would try absolutely anything to survive this. I’m very much aware of my internal ticking clock that cancer is now dominating. Tick tock, tick tock, tick tock…

I’m not going to tell you what hippie dippie remedies I’m trying because I don’t know if it’ll work and I don’t want to give others false hope. I’m also doing it for other reasons too that aren’t just related to cancer.

My body has aged. I don’t know how old my body is now but it’s certainly not the nearly 30 year old I am. It’s probably at least doubled in age. I wake up in the mornings unable to move my hands straight away. There are pains in my knuckles. It takes me a good couple of hours to loosen up in the mornings and feel like I can start the day. My knees at the end of the day ache. Like deep down in the bone hurt. Bending to sit hurts and getting up and down off the floor now means I make those old people noises I never did before. If I’m really tired they sometimes give way and I get a bit unstable with my balance.

These hippie dippie natural treatments that you hear about will never be researched further if they do work. Drug companies can’t patent a natural formula so it’s not profitable for them. It’s all to do with politics. But I’m also aware that if it did get to a serious stage where I’ve exhausted all medical treatment options I will never be offered a clinical trial. My cancer is just too rare. Clinical trials are for the “popular” cancers.

I am doing my own thing. I do my bit of research and I choose my own path. I’m not shunning medical treatment. Please don’t interpret this into something else. I’ve finished my treatment so it will not affect any medication or treatment plan. I just feel like I’m waiting on something that’s out of my hands and I want to take back control.

If I have to go back onto treatment then I will talk to my consultant or I will stop what I am doing if I am advised to. I still have my faith in my medical team. I just feel like because I’m not dying right now I’m not important to them. Which is great! It is! I’ve come to the other side that I thought I’d never reach but I’m also in no man’s land.

Its hard being left with your own thoughts. Your mind can be so torturous sometimes.

On a happier note, I went to a wedding on the weekend. My best friend of 19 years… Yes, Emily… That is correct, 19 years! Got married! I was super excited for the weekend not only for her but for me too! When she first planned her wedding I could not give any solid answer to her RSVP because I didn’t think I’d be well enough. At the start of her engagement it was hard for me to see 7 days ahead let alone 8 months! Wow… 8 months. Look how far I’ve come! 8 months ago I had just been told my cancer had gone metastatic and I went back on an immediate chemo plan.

So with all these wobbly moments where I feel lost, forgotten and unknown I just need to remember how far I’ve come. How much stronger I am physically and mentally now.

I like an easy life these days. Since losing my hair the care for my appearance has dropped a fair bit. I’m not self conscious about my looks or anything, I’m just not bothered by how people perceive me. From someone who was heavily involved in the beauty industry and had a fairly structured skincare routine from the age of 12 I’ve surprised myself.

This is me au naturel! Sneaking in cuddles with my new puppa Hugo 😁

I haven’t quite lost all my eyebrows and eyelashes but they’ve massively dropped out. When I’m without make up, I’m fairly featureless. So without hair and pretty much no eyelashes and eyebrows, I thought I’d give a few easy products a go!

Before all this cancer drama, I would say I filled in my eyebrows fairly heavily… Even though I probably didn’t need to. So to find a product that makes my life so much easier without going into the dramatic side of permanent make up makes me scream with delight.

Maybelline’s tattoo brow is a gel like brow product that tints your brows and the surrounding skin.

I’ve used light brown. I would have normally gone for dark brown but having no hair, I’ve toned down the colour for a more subtle appearance

You apply the gel and leave it on for 20 minutes for an all day wear. Now the best bit that makes my simple easy life all the more better is that if you leave the product on for 2-3 hours it can last up to 3 days!! 🤗

The colour is harsh but this is just the guide colour! I promise!After a couple of hours I peel it off. Go with the hair so you don’t pull any hairs out. Don’t worry it’s very gentle, it doesn’t hurt.

I find as my skin care routine is pretty shocking these days and you’re lucky if you catch me on a day that I shower, I find that the gel tattoo can last me up to 5 days.

Thankfully being a beauty therapist, getting the brow shape matching doesn’t take too much time. However if you’re new to any kind of brow product or don’t feel too confident it’s probably best to practice with a normal brow powder or pencil first. The gel is pretty forgiving in removal if it’s wet and you remove it straight away but if you leave it to set, then it will stain the skin beneath and you’ll be left with that error unless you scrub a fair bit.

YAY! The brows are back in a nice subtle shade

I tried the new fad of magnetic eyelashes too. They’re an “easier” alternative to strip lashes that use glue. With my eyelashes quite sparse and thin I thought strip lashes would preserve those that I have left as I won’t be aggravating the area like I would if I used mascara and the whole removal process with it. I’m shit with the normal glue strip lashes so the magnetic lashes sounded right up my street!

Well… That one wasn’t such a great one. They ended up making me look like a toy doll. And not in a good way. They stuck on pretty well but they were too straight and unnatural against the lash line and I looked like a twat.

So I’ll keep with my new fave product for brows but that’ll probably be as far as I’ll go.

In other news… Last last week was a pretty rough week! From having shingles, then chemo, I got a cold straight on top of it all. I have to say it is the absolute WORST I have ever felt during all of this. It is the first time I can say that I actually didn’t want to get out of bed. I pride myself on the the fact that I’ve never moped about and always kept somewhat of a routine. The only reason I did actually get out if bed was because I had a doctors appointment to see how my shingles was going 🙄

Thankfully after some strong pills and a lot of rest and relaxation I’m almost back to normal.

I got some good news for once this week. Chemo is working! My scan from last week has shown an excellent response. The chemo has reduced the size of the tumors and one is barely visible. With this news it will mean that I will continue with the rest of my planned chemotherapy treatments.

I should be happy, right?

And I’m pleased. I am. But I can’t exactly say I’m over the moon, bouncing from room to room, can’t stop smiling happy. And why you ask?

Because this isn’t the end.

Yes, it’s a good result. But how long for?

I told you last time, after the devastating results from my 3 month post treatment scan it’ll shit on any other happy news in the future. And it really has.

I’m pleased. I am. And I’m happy for my family and friends that they’re finally hearing something good… But it is definitely shadowed by the fact that this isn’t it. Even if it clears up after all of the chemotherapy and whatever treatment follows after, it won’t be the end.

It will most likely come back. It might not be straight away. It could be 5 months, a year, 5 years, 10 years or more but it will at some point return.

Until they figure out a way to completely eradicate it from my lymph or blood… Wherever it is travelling from, its not over.

I’m OK with this. I’d rather it wasn’t this way but I’ve accepted my fate in life. I’m still positive about my diagnosis. Don’t misconceive what I am saying. Just because the news before shat on every other bit of goodness now or in the future, I am still positive about my treatment. I feel good in myself and I won’t let that stop me from living how I want to live.

Its just… I don’t know… The big fat elephant in the room that’s staring me in the face is still there. So I’m happy but I feel like I can’t truly be 100% happy because before I know it the rug will be pulled from beneath my feet again and I’ll be back to square one. And it’ll crush me.

But worst of all, it’ll crush the people I love.

I hate that this now makes me look at the other side of life. The more pessimistic side… That’s not me. But I have no choice. I have to be realistic.

So this week I am happy. But probably not as happy as I would have been this time last year had I received good news. Because although I am happy, any big fat sunny happiness I have now gets shadowed by the dark and ugly side of cancer. And forever will be no matter how small it may become in the future years… It’ll always be there in the background waiting to pop back up and ruin everything all over again.

On another note, apparently I have shingles! 🙄 I’m an anomaly again as I don’t have the “normal” symptoms. Just a rash on my back, other than that I feel pretty normal… Considering.

It shouldn’t interfere with my chemo on Friday thank goodness but bloody hell… Can’t catch a break at the minute! 😂

I think this one will be about how chemo makes me feel. It’s a difficult one to explain but also it might be something that not everyone feels when they have chemo. This is my reaction to the drug. And it’s difficult to explain when the effects have worn off because I try my hardest to remember how it makes me feel but at the time that’s all I feel but when I’m better I forget. Sounds crazy, right! But everything is so easily forgotten when you feel better.

So there is a thing called chemo brain. And I guess that is what I’m suffering with at the end of the day but that’s not really what I thought it would be called. Chemo brain sounds like you’re forgetful or it affects your mental ability… And I guess in a way it does. But my experience is nothing to what I imagined.

So the day of chemo my reactions are all pretty immediate. I generally get a huge dose of antihistamines, which is basically a syringe full of Pirton. This is to help my body cope with the chemo paclitaxel… You know, first time anaphylaxis. This prevents any reactions occurring but it also makes me very very drowsy. So pretty much for the day of chemo I’m in and out of sleep. It’s a great way of killing an 8 hour day but it still drags… And my poor mum still has to suffer through it along with me.

One of the first things to change with chemo is my taste. This doesn’t normally last. Just for 4-5 days. I’m not sure how I can explain it, it’s like I’ve got wax in my mouth or my mouth is all cotton wool like, I can’t taste flavours as well, and things aren’t as appealing. I struggle to eat meat at this point coz the texture of it can be very off putting.

Followed closely from the tastelessness is the nausea. This is probably a big factor to the chemo reactions. As I suffer with nausea this means that my appetite reduces. It’s tough to find what I fancy to eat and I try so hard to eat what’s good for me. I have 4/5 different types of anti-nausea pills which help combat any actual sickness but it makes my mouth even more woolly and changes tastes even more.

Chemo affects you mentally too. I go very spaced out for a few days. I find it better on these days when people don’t talk to me. It sounds so silly but I find it so hard to concentrate on texts and function on what I should be saying. It sounds so crazy, right! It’s like there’s a massive fog over my brain that prevents me from focusing properly on what I should be doing. I zone out easily. I literally become some sort of chemo zombie. I don’t just think it’s in my head though. It weirdly affects my eye sight. Not in an awful way and it only lasts for about 3/4 days after and then I’m fine I just get this ring of haze around my sight and this makes focusing difficult. It’s like my brain just gives up trying to focus on what I should be doing.

I become a ghost to any social media and friends seem to know they won’t get a lot out of me on those days.

It all sounds so awful what I have to deal with when you say it out loud but you just have to deal with it. This is my life. If I want to be better then I have to deal with these after effects.

I have to apologise in advance for this post too. I’m still very foggy headed this morning so this post has taken me longer than usual to write and I’m sorry if it drags off in weird directions or doesn’t make much sense! It’s a real life struggle for me this zombie brain thing but it’s easier to explain when you’re actually mulling yourself through it then if I write it in a few days time when it’s a distant memory.

I’m in a really good place right now. I’m not sure what made me turn this corner and see things differently and I can’t tell you the secret on how I did it. It’s just something I’ve noticed in myself in the last few weeks. It’s probably my I-don’t-give-a-fuck-attitude but I don’t think it’s all that.

There’s just contentment. Weird I know in the state my life is in right now. I don’t know how I can explain it… Cancer is very much still in the forefront of my mind 24/7 but I’m not letting it rule my life. I mean obviously it does, but I guess I’m less bothered about it? Oh gosh, this is hard to write… I mean I’m bothered by the status of which direction it’s taking me in my life but I’m dealing with it.

I guess there is no word that exists for how I feel. Because any positive word detracts from what is going on and I’m still very much involved with it all. Positive words make it seem OK and makes it minor but this cancer isn’t minor. It’s a huge, horrible thing going on. It’s up all in my life saying “look at me!”.
Negative words make it all sad and worse than it is. I mean it’s bad… The worst it could be, but if I let that rule my life then I wouldn’t be the person that I am.

It seems strange, but I think my turning point was when I lost my hair. There was something very liberating about it. I really couldn’t give two shits about what people think when they see me. If you knew me a couple of years ago, you would have known I wouldn’t have gone to the supermarket without even doing my make up! 🙈 I look back on that now and think how shallow?! But then I think it was a time where my biggest dilemma in life was deciding what my plans were for the weekend… Oh how nice it would be to be back there. Narcissism and all.

When I’m out and about I’m very much aware on how people look at me. And to be fair their reactions surprised me. Most people didn’t care. They didn’t do a double take. They didn’t stare. They just went about their normal business.
To be honest though, I only go out when I’m well so they may look at me like I’ve just decided to shave my head. It seems to be a popular thing at the moment.

I say most people because I have seen people stare at me. And weirdly enough it’s the older generation and they’re in no way subtle about it. They literally stop dead still, stand and stare. And they don’t even look away when I catch them doing it! 😂 I don’t let them get away with it (that’s the best bit about having cancer, you really don’t give a shit) I’m not sure why the older generation are so obvious. Because those who know me, know subtly is lost on me so they really could get away with it if they’re discreet. I’m not sure what they’re seeing… Maybe I’ll ask next time I catch them staring. A walking time bomb… Cancer… Or just a fashion statement? I’m just not sure.

Now the weather is getting colder I’ve had to buy a hat so I blend in better with everyone else. I don’t care about blending in, but it’s freaking cold when you have no hair!! I’ve also gotta be sensible about these things. I can’t risk getting a cold for how I look for the sake of being defiantly different.

I’m playing the big fun game of waiting again. I don’t really know what’s going on until I’ve had my 3rd round of chemotherapy and they can scan me again to see what the cancer is doing. I’m not so bothered that I’m playing the waiting game this time round. Last time it was torture. The not knowing. But this time… I’m in this blissful place of oblivion. I guess you could say it’s a form of denial. But lately after every waiting game I play I seem to get bad news. So yes, maybe it’s a form of self preservation but I feel good in myself and how I feel, so this waiting game at the moment I am fine with. And I can play it a lot longer if it means I don’t have to find out the outcome. But that will never happen. I will find out my fate eventually no matter how much I mentally scream and cover my ears.

I’m trying to keep these posts with a bit of variety coz I don’t want to be that boring cancer story. But really how interesting can you keep this topic?

So I lost all my hair. I told you it was happening but I bet you didn’t think it would all happen in one go. Haha. So I had a really good week where I was busy out visiting friends and this was the week where my head hurt. So by that weekend if I really tried I could have pulled it all out. But I wanted to keep it in for the weekend as I was out with friends and I didn’t wanna look like “that” person. So I just hairsprayed the shit out of it all. I figured if hairspray can normally keep a style in place it can keep my hair from falling out too, right? Haha. Well believe me… There was no disaster! It worked! So by the time bank holiday Monday came round I didn’t think I could push it for any longer. So I went outside and just started pulling… And pulling… And pulling. It didn’t hurt. By this point I think it was just sitting in the hair follicle. By the end of it all it looked liked I’d just brushed a big fluffy dog but unfortunately there was no dog to cuddle at the end of it 😂

👆🏻Yep, all my own! No dogs involved!

I was OK about it all, I mean it took me a while to get used to looking at myself in the mirror every time I came across one and I have major tan line issues going on but I’m OK with it. This is just another factor of cancer I have to deal with. It just annoys me that I now look like the cancer victim. Before I could hide it pretty well and pretend to be normal but there’s no denying what I’m going through now. I’m still not doing the wig route. I don’t see the point. It’s obvious what they are and they’re never nicely made. And the whole head scarf look is worse! That’s just highlighting the fact of what you’re going through. So I may be a beacon of light with my pastey white head but at least I’m still being me.

I haven’t lost my eyebrows or eyelashes yet. I expect I will and I’m gutted that I probably will. Because that is the epitome of “cancer victim” and you lose all your features so you look sick no matter what… But ah well… As with everything else we’ll cross that bridge when I come to it!

It’s been a good week this week. I mean a really good week. This is what I was hoping for going through chemo. I’d have my bad days but I’d also have my really good days where I feel normal again.

Its funny, I look at myself in the mirror and when it’s like now, a good day, I think this doesn’t look like a face of cancer. Unless you know me and what I’m going through you wouldn’t know what I’m battling. I guess it’s a good thing because I have a respite from having cancer dominate my life. I mean on my good days it’s still there lingering in the background. It’s the first thing people ask if I haven’t seen them in a while and I still have to take my daily dose if medication that I never had to do before. But I’m not that sickly person where it’s obvious what’s going on.

Nobody sees me on my bad days. And I mean nobody. The only people who have seen how horrendous my bad days are are my mum, dad and sister. You might think it strange because don’t get me wrong, I have a huge support network that would be there for me at a drop of a hat if I asked them to sit with me, but I just couldn’t do that. I’m not sure if it’s to protect them or me. There’s a sort of vulnerability being that exposed to someone. They’ll be seeing me at my absolute worst. Maybe I’m being completely selfish by doing this but I just don’t think I could handle it if they treated me differently. I don’t think my absolute closest people would intentionally do that but I don’t want to be treated like I’m fragile. And I don’t want them to carry around that burden of seeing me like that. It’s tough. It’s not pretty. And when it’s bad it’s bad but on the upside when it’s good it’s really good.

I’ve had a lot of conversations recently on the next stages of my treatment and how I’ll be going about it. I think I’ve got a better perspective of it all this time round. Last time I was in pain and I just wanted treatment to get started. I couldn’t tell you what I was thinking or what I was going through coz I can’t remember. I was taking a lot of pain meds and slept 80% of the time.

But this time, I’m aware of quite a lot. Like for example, my head hurts. And I don’t mean I have headaches but I can actually feel that my hair is going to fall out. It’s strange I didn’t know that you could feel it. I’ve never heard any stories of this before so am I the only one that can feel it? Or is it just not talked about? I didn’t feel it happening last time but that could be because I was in pain last time so did the pain of the cancer numb out the pain in my head? The only way I can explain it is it’s a bit like when you have a really bad cold where it’s bordering on flu and your hair hurts. To move it, to brush it, to touch it. Or maybe if you have a really tight ponytail and you take it down at the end of a day and you get that relief but it’s a little sore. It’s kinda like that. I can’t help but imagine these little bugs under my skin munching away on my hair follicles. Haha. I knew what was happening but it’s only on my head I can feel it. I can’t feel it on my arms or legs where other hair is. So maybe my head is just super sensitive at the minute. You might just think I’m being paranoid and a little sensitive to the fact that I know I’m going to lose my hair. I’m not. I can pull my hair out. It’s not normal to tug your hair and be able to see 10+ strands of hair in your hand. Go on, give it a go. I bet you won’t pull any out, maybe just 1 but not a lot. I got mum to clipper my hair the other week when I finished chemo. I didn’t see the point in the 80s bouffant if it was all gonna drop out. I don’t mind it clippered. I’ve been told I can pull it off. Haha.

Little things have become a little uncomfortable to me now that my head is so sore. Showering my hair takes a lot of courage to do. Just the shampooing motion through my hair hurts. It becomes a little less sensitive after about 5 minutes under the water but it doesn’t completely go away. Even pulling on a jumper over my head hurts. That was a discovery I found out this morning when I got dressed. 🙄 it’s even worse when I forget and I go and scratch an itch!

But other than the head, things are all really good! I’m out seeing a lot of friends this week. Gotta make the most of it whilst I can!! I bought a skateboard too! 😂 maybe I’m being a bit ambitious with that one but I thought it was a good idea! It’s giving me something to do and I can get about on my bad days. Because when it is a bad day I can’t walk very far so I figured on a skateboard I can go further! I don’t think my mum and dad think it’s a very smart idea but hey, it’s getting me out so they’re not gonna say anymore. In time, I guess we will see! Haha

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